May 24, 2023
Status update – doing great!
The past 6 weeks has been busy for Chris and I, but full of so much life. We’ve been able to spend time with each other and our families and friends. Adventuring to new restaurants, small trips to celebrate my birthday and attend REVOLVEfestival last month, enjoying bike rides and lots of walks. Updates get harder to talk about as we get further away from surgeries, treatments, doctors visits which is all great, it’s also weird to not still provide progress in regards to how things are going as we still want to share the entire process, over years, for whoever may be in our shoes in the future.
So with that, here are some health updates:
1. I’m recovering well from my reconstructive surgery. I saw Dr. Ng on Tuesday for a 2 month post op visit. She said I am healing nicely and that I won’t need to see her again until 1 year post surgery! Not going to the doctor is great but also still a little weird for me. I’m happy I am not going to doctors appointments multiple times a week but in the back of my head I also want to go on a regular cadence to make sure everything is all good – it’s a little bit of a mind fuck to be honest and will take time to recognize it’s all good and it continues to mean I’m healing. Dr. Ng suggested that I get physical therapy, which is really what I was hoping for. The arm extension in my left arm/shoulder has been a struggle. The right arm can fully extend to the sky, but the left arm gets to about a 45 degree angle. Prior to reconstructive surgery my left arm was at about an 80 degree angle and I had worked really hard to get it back to that place post mastectomy. The reconstructive surgery has pushed me back and its not recovering as quickly as it should considering reconstructive surgery was much easier. So I’ll start physical therapy as soon as I can. The one thing that came out of my visit with Dr. Ng is that I should really avoid laying on my stomach and in particular should avoid pressure being applied to my chest. So, I asked…can I ever get a massage….the answer is, no, not unless I’m sitting up. Basically the skin between my implants and my chest is so thin (because they removed all breast tissue) that there is concern that blood could not flow properly and that I could injure myself creating internal problems. So, with that said, I’ll need to be cautious with pressure on my chest for the rest of my life – which is totally ok just a bummer that I won’t be able to fall asleep to a relaxing massage! The future of my appointments with Dr. Ng will involve annual check ups but additionally they will do yearly MRI’s to ensure everything internally is still aligned.
2. I saw Dr. Vandermolen earlier this month. He checked my blood work as they do each month and for the first time since before treatment, my numbers were within range! This was a win for me – I had been monitoring my white blood count and red blood count a lot since treatment ended and it fluctuated so much each month that prior to surgeries I was very cautious (per doctors orders) to stay clear of anyone who was sick. Granted my numbers could shift again, but we take the wins and continue to hold onto them. The best part of the visit was that Dr. Vandermolen looked at Chris and told him, I’m doing great! It made us both smile and to get his confirmation just puts our minds at ease. Dr. Vandermolen is our guiding light, we trust him with my life.
3. I’ve had some colon issues the past 6 weeks or so. Started to work with our PCP to get some blood work and stool testing done. The testing all came back normal with some weird nuances – will explain in a bit. So next steps were to reach out to Dr. Quist, my GI doctor, to determine what else we could do. He scheduled me for a colonoscopy – if you haven’t had one, wowzers – 24 pills and 128oz of water over the course of 8 hours sure does add up! And then of course the aftermath of all of that is super fun – we’ll just say I spent a lot of time in the bathroom that day. Dr. Quist conducted the colonoscopy and immediately told us there were no polyps or cancer – we assumed this would be the news, but of course it was still nice to hear. A week or so later we were given the biopsy results from the colonoscopy – again, all clear! So, what the heck is going on – we still don’t know. But as I mentioned, some of the testing I had done with our PCP added some additional context, but still leaves some continued monitoring.
a. One of the tests was a food allergy test. The results are graded 1-5 with 5 being the highest level of allergy – all of my scores were 4-5, so basically it concluded that I am allergic to everything, and the results said I should be on a strict diet of….1 coffee bean, 1 green bean and 4oz of chicken / day. Well, this is definitely not sustainable, so the conclusion is to monitor my foods (I’ve started a daily food log) to see what causes any issues, keep eating how I have been and check again in 6 months. The interesting thing is that our PCP spoke to a specialist from the lab and they mentioned that 1) the case of someone being allergic in the grades of 4-5 is very rare, he’s seen it happen to about 10 – 15 people. But, 2) he also said that chemotherapy and immunotherapy could have disrupted my gut so much that it’s causing a false read, hence the reason they want to check again in a few months.
4. Menopause. Prior to treatment Dr. Vandermolen asked us if we wanted to freeze any eggs because chemotherapy would put me into peri-menopause. Considering Chris and I didn’t want to have kids, we were comfortable with the outcome (and honestly were happy that this solidified the fact that we wouldn’t be having kids)! Over the course of treatment and even to today, I’ve continued to have hot flashes and have not had a period. I was curious if I was still in the peri-menopause phase and if I’d ever get a period again. So, I had our PCP do some hormone testing. It concluded that I am actually in post-menopause! So, I basically went through peri-menopause and menopause in a year and am now post-menopausal with hot flashes and no additional side effects. Granted I’ll be in post-menopause for the rest of my life and still could experience the side effects of menopause, but my body basically went through a ~10 year process in one year – pretty wild.
All in all those are the updates for now. Continuing to see Dr. Vandermolen monthly for blood work and check ups and will have my next PET Scan in Fall, a GI post feeding tube removal in July and a follow up with Dr. Guerra, one year post mastectomy in November. The monitoring is in full effect and we will gladly take it!!
All our best and lots of love, Chris & Lauren
